Wednesday, June 13, 2012

Blah Blah Blah... I am fed up.

I have been feeling very blah the last few days. I think I have finally hit my "wall". You know, that point where you just don't want to continue anymore, and even if you manage to continue it's only because others drag you through it. Of course I am being dramatic, typical of me when I am in a bitchy mood, but I have a right to have had enough. I have a right to say no more. It is so easy for everyone to encourage me and tell me how well I am doing, but that gets old fast. I don't want to be strong. I don't want to smile through the rough patches while I wait for better days. I definitely do not want to push myself so that I feel accomplished, because doing so will take up all of my energy. I want to do what people are supposed to do when they are sick. To sleep a ridiculously insane amount, to not feel the need to look good in public, to not have to set priorities and please people. If I can lounge around the house I will be perfectly content. Basically, I want to be sick.

Wait.

Don't get me wrong. I know what you are thinking but it is not what I mean. I do not actually want to be sick. Nobody does. But since I am and have been for such a very long time, I want to be able to be sick without feeling guilty for all the things in my life that I am missing. I already feel shitty because I am ill, why should I guilty for being ill, feel even worse because I can't meet people's expectations? Why do people find the concept of being ill so hard to understand? If you are healthy you are well and able to everything as usual - no big deal, but if you are sick people expect you to be strong and still do the things healthy people do. In first year sociology, way back when in Fall 2010 I learned about the "sick role". I don't want to be the person to fulfill that role, to be that member of society, but I don't want to act as if I am healthy either. I want to be free to have my good days when I feel up to getting out of the house, and then have my down days where I can crash at home without worrying what other people think.

Today, at clinic for my PICC dressing change, all I wanted to do was stop. Just to stop treatment and say F*uck this, I will take my chances with the osteomyelitis. Everything started o.k. The nurse (Victoria) got the old dressing off and everything ready, sterile field an all. We donned our masks and we began. Usually the chloraprep swabs create a wonderful sensation as they rub the skin that is trapped under the tegaderm dressing (aka the I can't get to it if it itches barrier). This was much needed since the insertion site has been oozing gunk (perfectly normal) the whole week. Most usually comes off with the dressing, but today some chunky stuff needed a little bit of extra prodding. The chloraprep felt great for a few minutes. I even told the nurse that, and that I could sit there all day with her swabbing my arm. But it soon began to itch, and then then itch began to hurt just a smidgin, and then that slightly hurting itch became a painful OMFG this is an insane kind off torturish itch. And I couldn't do anything. Nothing at all. We were still waiting for the chloraprep to dry before finishing so the nurse started to flush the line. Every week we need to check for blood return. Last week we got none. We didn't get any today either. The nurse sat there, trying her best but it just made everything hurt more. But the nurse had to keep trying because they need blood return. We couldn't use the Heparin available because it can cause problems with the Tazocin. The Heparin prevents blood clots and the Tazocin can make bleeding hard to stop so you can imagine the emergency if they interact with one another.  After a few minutes Victoria gave up (rule of thumb for PICC lines = if it hurts, stop.).  I was left sitting there, almost in tears, begging Victoria to pull the line out. I was completely ready to be done with IVs, to take my chances with the osteomylitis if I still have it. But of course Victoria (wonderful and funny as she is) can't pull the line as she obviously needs a doctor's permission to do that. So we returned our attention to my every increasing itch. She tried using Iodine swabs, which worked for all of five second, and then the itch got even worse. I know have a Mepilex dressing over my PICC line. It's not great because it's not see through, but we couldn't take the risk of me being allergic to the tegaderm. Victoria said if the itching stay the same or gets worse to come back the next day. After a few hours it did finally die down, but the itch is still there.

And I just want this all to be over. I think I need to have a good long discussion with my infectious disease specialist when I see her next.

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